My disability gives me different view on Terri Schindler-Schiavo case
By Laura Hershey

November 11, 2003

As a disability-rights activist, I've been closely following the case of Terri Schindler-Schiavo, the Florida woman whose life has become a point of contention between her husband and her parents.

Terri Schindler-Schiavo's husband-guardian was initially granted permission to end Schindler-Schiavo's life by starvation and dehydration because of a widespread prejudice against people with disabilities. That prejudice poses a danger not only to Schindler-Schiavo but also to untold numbers of people, now and in the future -- especially people with impaired communication and people judged by others to have an inadequate quality of life.

Terri's husband, Michael Schiavo, based his decision on a shaky ground of vague recollections. After Terri's brain injury in 1990, Michael Schiavo won a malpractice suit against the doctor he accused of failing to properly diagnose his wife. A jury awarded $1.2 million, about $750,000 of which was earmarked for Terri's care.

After he collected the money, Michael Schiavo suddenly remember a conversation where Terri supposedly said that she would not want to live on artificial life support. At least one witness recalls a separate conversation in which Schindler-Schiavo questioned a decision to withhold life support from a patient in a coma. Nevertheless, a Florida court accepted Michael Schiavo's testimony as sufficient evidence to authorize her starvation.

Since then, the Florida state legislature and Gov. Jeb Bush have intervened, ordering the feeding tube reinserted. This touched off a firestorm of controversy surrounding the constitutionality of such intervention.

As I see it, the state should have gotten involved much earlier, to protect a vulnerable adult from abuse and neglect.

Schindler-Schiavo's condition has been inaccurately described as "comatose" and "vegetative." While she certainly has major limitations, Schindler-Schiavo can and does look around, respond to her environment and interact nonverbally with her mother and other loved ones.

Nor is Schindler-Schiavo being kept alive artificially, as some have said. She is receiving food and water -- a basic necessity -- through a feeding tube.

I use supplemental oxygen 24 hours a day and get around in a motorized wheelchair. Does that mean I'm being kept alive artificially? Does that mean I could be put to death?

For those of us who live with disability every day, the need for some technological aid does not evoke horror as it seems to for many nondisabled commentators. What does frighten us is the way that a life-and-death decision can be made -- even with questionable evidence and conflicting testimony -- based on a collective, deep-seated conviction that it's better to be dead than severely disabled.

I support the right to refuse treatment, but the Schindler-Schiavo case is not a simple matter of respecting a patient's wishes. It's about the nondisabled public's wish to affirm its bias against living with significant disability and Michael Schiavo's wish to marry his fiancee who is pregnant with his second child.

The Schiavo case has become a cause celebre, polarizing the "right-to-die" movement and the "right-to-life" movement. But Terri Schindler-Schiavo is first and foremost a disabled woman facing the worst kind of discrimination -- murder by starvation.

In any other conceivable scenario, a man who deprived his wife of food and water would be considered a criminal.

And a society that countenanced it would be barbaric.

Laura Hershey is a writer, speaker, trainer and activist, as well as a board member of Not Dead Yet (www.notdeadyet.org), a disability-rights group opposing medical discrimination and assisted suicide. Hershey's articles have appeared in The Progressive, Ms. magazine, Women's Studies Quarterly and many other publications. She can be reached at pmproj@progressive.org.

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By Wendell Berry

Manifesto: The Mad Farmer Liberation Front

Love the quick profit, the annual raise,
vacation with pay. Want more 
of everything ready made. Be afraid 
to know your neighbors and to die.
And you will have a window in your head.
Not even your future will be a mystery 
any more. Your mind will be punched in a card 
and shut away in a little drawer.
When they want you to buy something 
they will call you. When they want you
to die for profit they will let you know. 
So, friends, every day do something
that won’t compute. Love the Lord. 
Love the world. Work for nothing. 
Take all that you have and be poor.
Love someone who does not deserve it. 
Denounce the government and embrace 
the flag. Hope to live in that free 
republic for which it stands. 
Give your approval to all you cannot
understand. Praise ignorance, for what man 
has not encountered he has not destroyed.
Ask the questions that have no answers. 
Invest in the millennium. Plant sequoias.
Say that your main crop is the forest
that you did not plant,
that you will not live to harvest.


Say that the leaves are harvested 
when they have rotted into the mold.
Call that profit. Prophesy such returns.
Put your faith in the two inches of humus 
that will build under the trees
every thousand years.
Listen to carrion—put your ear
close, and hear the faint chattering
of the songs that are to come. 
Expect the end of the world. Laugh. 
Laughter is immeasurable. Be joyful
though you have considered all the facts. 
So long as women do not go cheap 
for power, please women more than men.
Ask yourself: Will this satisfy 
a woman satisfied to bear a child?
Will this disturb the sleep 
of a woman near to giving birth? 
Go with your love to the fields.
Lie easy in the shade. Rest your head 
in her lap. Swear allegiance 
to what is nighest your thoughts.
As soon as the generals and the politicos 
can predict the motions of your mind, 
lose it. Leave it as a sign 
to mark the false trail, the way 
you didn’t go. Be like the fox 
who makes more tracks than necessary, 
some in the wrong direction.
Practice resurrection.

Wendell Berry is a poet, farmer, and environmentalist in Kentucky. This poem, first published in 1973, is reprinted by permission of the author and appears in his “New Collected Poems” (Counterpoint).


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